The LifeArc-Kidney Research UK Centre for Rare Kidney Diseases
Transforming treatments for rare kidney diseases
Rare diseases cause around 90% of kidney failure cases in children. Treatments are limited and some are unavailable to children. The UK kidney ecosystem aims to unite the research and patient community to transform treatments for rare kidney diseases on a national scale.
About the Centre
Accelerating research and treatments across the UK, providing fairer access to all.

- Uniting university researchers, healthcare professionals, charities, industry and patient groups to develop treatments for rare kidney diseases that are accessible to every patient.
- Connecting the 13 childhood kidney care centres in the UK, along with the registry of rare kidney diseases (RaDaR), and NURTuRE - a research resource called a biobank which has donated samples and data from individuals living with kidney disease.
- The 10.4M centre is funded by LifeArc who are investing £9.4M and Kidney Research UK who are contributing £1M to support the work of the centre over five years.
- The LifeArc funding is part of a £40M investment over 5 years to fund four LifeArc Translational Centres for Rare Diseases, building on the UK’s rich rare disease base and driving progress in areas of unmet need.
- LifeArc is a not-for-profit medical research organisation. They help turn promising scientific research into impact for people living with rare diseases and for areas of global health.
- The Centre aims to include a clinical trial that could reduce kidney failure in children by one third, and to build on the existing national renal sample biobank (NURTuRE), national rare kidney diseases registry (RaDaR) and guidelines of care.
Meet Dr Louise Oni
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Dr Louise Oni is a senior lecturer in paediatric nephrology at the University of Liverpool and clinical associate professor at the UCL Centre for Bladder and Kidney Health. She is also an honorary consultant paediatric nephrologist at Great Ormond Street Hospital for Children.
Meet Dr Louise Oni: Director of the LifeArc-Kidney Research UK Centre for Rare Kidney Diseases
Dr Louise Oni is senior lecturer in paediatric nephrology at the University of Liverpool and honorary consultant paediatric nephrologist at Alder Hey Children’s Hospital, who is leading the LifeArc-Kidney Research UK Centre for Rare Kidney Diseases.
"My name is Louise Oni, and as a researcher and clinician working with children who have rare kidney diseases, I spend a lot of time with young people whose early years are filled with appointments, procedures, and illness.
"If a child spends two or three years on dialysis, they can’t get that time back. It’s gone. But what if we could find a way to slow down or stop the progression of childhood kidney disease? What if we could prevent children’s kidneys failing, or at least delay it into adulthood? Can you imagine the difference that would make to them?
"Instead of hours and hours and hours connected to a machine that cleans their blood, they could be doing all the things children should be doing. Playing, having fun. That’s our goal at the new LifeArc-Kidney Research UK Centre for Rare Kidney Diseases.
“At the moment, the work on new treatments and the systems to test new treatments in research of rare diseases are designed for adults. We know that around 75% of rare diseases will begin in childhood, so we need to invest in improving the systems and encouraging everyone to include children in research to allow new treatments to reach the patients with the biggest need.”
Kidney Research UK is also proud to be supporting Louise in her own important research into a disease called immunoglobulin A (IgA) vasculitis, a disease more common in children which causes inflammation of the blood vessels, which can cause kidney damage.
We asked Louise about how she became interested in children's kidney medicine.
“I first became interested in children’s medicine whilst working at Manchester Children’s Hospital where I was lucky enough to be able to rotate between the different departments. It was the children’s kidney team there who inspired me into the world of kidney diseases, and I was fascinated by the range of work, including managing patients who were very acutely unwell to those who have long-term kidney diseases.
“This inspired me to begin a career in children’s kidney medicine that then went on to include a laboratory research career after I spent time with the incredible research team at Bristol Renal. I then had the opportunity to do a PhD at Alder Hey Children's Hospital looking at inflammatory kidney disease and that kick started a career dedicated to children’s kidney disease.”
At the moment, Dr Oni is one of only a few university employed research doctors in the whole of the UK. The new research centre will create many more opportunities to attract brilliant new people to kidney science and develop their skills. The patients of the future will be in good hands.
Research aims of the centre
How the centre aims to transform treatments for people living with a rare kidney disease.
Aligning
care
Ensuring high quality care for all patients with rare kidney diseases.
Bridging datasets
Using data for new insights into rare kidney diseases.
Connecting science
Research to investigate new treatments for rare kidney diseases.
Developing treatments
Clinical trials for new treatments for rare kidney diseases.
We fund cutting edge research
We are the largest charity dedicated to kidney research in the UK.
We're committed to funding research into rare kidney diseases. We have a range of research grants available that you can apply for in this area.
Research news highlights
Read about the life-saving research we're funding.

Could understanding blood pressure changes during sleep in kidney patients be key to protecting heart and vessel health?

New results suggest that bladder cancer could be caused by the body’s response to common childhood virus

SMC approval of mercaptamine offers new hope and choice for people living with cystinosis in Scotland

Research looking at repurposing drugs to treat polycystic kidney disease shows promising new results

Personalising treatments for focal and segmental glomerulosclerosis patients receiving a kidney transplant
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